References
- Bang, J., Spina, S., & Miller, B. L. (2015). Frontotemporal dementia. The Lancet, 386, 1672–1682. doi:https://doi.org/10.1016/S0140-6736(15)00461-4
- Barca, M. L., Thorsen, K., Engedal, K., Haugen, P. K., & Johannessen, A. (2014). Nobody asked me how I felt: Experiences of adult children of persons with young-onset dementia. International Psychogeriatrics, 26, 1935–1944. doi:https://doi.org/10.1017/S1041610213002639
- Boots, L. M. M., Wolfs, C. A. G., Verhey, F. R. J., Kempen, G. I. J. M., & de Vugt, M. E. (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. International Psychogeriatrics, 27, 927–936. doi:https://doi.org/10.1017/s1041610214002804
- Bradley, E. H., Curry, L. A., & Devers, K. J. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Services Research, 42, 1758–1772. doi:https://doi.org/10.1111/j.1475-6773.2006.00684.x
- Caceres, B. A., Frank, M. O., Jun, J., Martelly, M. T., Sadarangani, T., & de Sales, P. C. (2016). Family caregivers of patients with frontotemporal dementia: An integrative review. International Journal of Nursing Studies, 55, 71–84. doi:https://doi.org/10.1016/j.ijnurstu.2015.10.016
- Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41, 545–547. doi:https://doi.org/10.1188/14.ONF.545-547
- Charmaz, K. (2014). Constructing grounded theory. London, United Kingdom: Sage.
- Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among five approaches. Los Angeles, CA: Sage.
- Dam, A. E. H., Boots, L. M. M., Boxtel, M. P. J., Verhey, F. R. J., & de Vugt, M. E. (2018). A mismatch between supply and demand of social support in dementia care: A qualitative study on the perspectives of spousal caregivers and their social network members. International Psychogeriatrics, 30, 881–892. doi:https://doi.org/10.1017/S1041610217000898
- de Vugt, M. E., & Verhey, F. R. J. (2013). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62. doi:https://doi.org/10.1016/j.pneurobio.2013.04.005
- Diehl-Schmid, J., Schmidt, E. M., Nunnemann, S., Riedl, L., Kurz, A., Förstl, H., … Cramer, B. (2013). Caregiver burden and needs in frontotemporal dementia. Journal of Geriatric Psychiatry and Neurology, 26, 221–229. doi:https://doi.org/10.1177/0891988713498467
- Draper, B., Cations, M., White, F., Trollor, J., Loy, C., Brodaty, H., … Withall, A. (2016). Time to diagnosis in young-onset dementia and its determinants: The INSPIRED study. International Journal of Geriatric Psychiatry, 31, 1217–1224. doi:https://doi.org/10.1002/gps.4430
- Ducharme, F., Lévesque, L., Lachance, L., Kergoat, M.-J., & Coulombe, R. (2011). Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: A descriptive study. International Journal of Nursing Studies, 48, 1109–1119. doi:https://doi.org/10.1016/j.ijnurstu.2011.02.011
- Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. doi:https://doi.org/10.1111/j.1365-2648.2007.04569.x
- Evers, J. (2015). Kwalitatieve analyse: Kunst én kunde. Amsterdam, Nederland: Boom Lemma Uitgevers.
- Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine.
- Gossink, F., Dols, A., Krudop, W. A., Sikkes, S. A., Kerssens, C. J., Prins, N. D., … Pijnenburg, Y. A. (2016). Formal psychiatric disorders are not overrepresented in behavioral variant frontotemporal dementia. Journal of Alzheimer's Disease, 51, 1249–1256. doi:https://doi.org/10.3233/JAD-151198
- Gossink, F., Pijnenburg, Y., Scheltens, P., Pera, A., Kleverwal, R., Korten, N., … Dols, A. (2018a). An intervention programme for caregivers of dementia patients with frontal behavioural changes: An explorative study with controlled effect on sense of competence. Psychogeriatrics, 18, 451–459. doi:https://doi.org/10.1111/psyg.12351
- Gossink, F., Schouws, S., Krudop, W., Scheltens, P., Stek, M., Pijnenburg, Y., & Dols, A. (2018b). Social cognition differentiates behavioral variant frontotemporal dementia from other neurodegenerative diseases and psychiatric disorders. The American Journal of Geriatric Psychiatry, 26, 569–579. doi:https://doi.org/10.1016/j.jagp.2017.12.008
- Harciarek, M., & Cosentino, S. (2013). Language, executive function and social cognition in the diagnosis of frontotemporal dementia syndromes. International Review of Psychiatry (Abingdon, England), 25, 178–196. doi:https://doi.org/10.3109/09540261.2013.763340
- Hogan, D. B., Jetté, N., Fiest, K. M., Roberts, J. I., Pearson, D., Smith, E. E., … Maxwell, C. J. (2016). The prevalence and incidence of frontotemporal dementia: A systematic review. Canadian Journal of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, 43(S1), S96–S109. doi:https://doi.org/10.1017/cjn.2016.25
- Ibañez, A., & Manes, F. (2012). Contextual social cognition and the behavioral variant of frontotemporal dementia. Neurology, 78, 1354–1362. doi:https://doi.org/10.1212/WNL.0b013e3182518375
- Kaizik, C., Caga, J., Camino, J., O'Connor, C. M., McKinnon, C., Oyebode, J. R., … Mioshi, E. (2017). Factors underpinning caregiver burden in frontotemporal dementia differ in spouses and their children. Journal of Alzheimer's Disease, 56, 1109–1117. doi:https://doi.org/10.3233/JAD-160852
- Karnatz, T., Monsees, J., Wucherer, D., Michalowsky, B., Zwingmann, I., Halek, M., … Thyrian, J. R. (2019). Burden of caregivers of patients with frontotemporal lobar degeneration - a scoping review. International Psychogeriatrics, 1–21. doi:https://doi.org/10.1017/S1041610219000176
- Knopman, D. S., & Roberts, R. O. (2011). Estimating the number of persons with frontotemporal lobar degeneration in the US population. Journal of Molecular Neuroscience, 45, 330–335. doi:https://doi.org/10.1007/s12031-011-9538-y
- Massimo, L., Evans, L. K., & Benner, P. (2013). Caring for loved ones with frontotemporal degeneration: The lived experiences of spouses. Geriatric Nursing (New York, N.Y.), 34, 302–306. doi:https://doi.org/10.1016/j.gerinurse.2013.05.001
- Mendez, M. F., Fong, S. S., Shapira, J. S., Jimenez, E. E., Kaiser, N. C., Kremen, S. A., & Tsai, P. H. (2014). Observation of social behavior in frontotemporal dementia. American Journal of Alzheimer's Disease and Other Dementias, 29, 215–221. doi:https://doi.org/10.1177/1533317513517035
- Mioshi, E., Foxe, D., Leslie, F., Savage, S., Hsieh, S., Miller, L., … Piguet, O. (2013). The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Disease and Associated Disorders, 27(1), 68–73. doi:https://doi.org/10.1097/WAD.0b013e318247a0bc
- Nunnemann, S., Kurz, A., Leucht, S., & Diehl-Schmid, J. (2012). Caregivers of patients with frontotemporal lobar degeneration: A review of burden, problems, needs, and interventions. International Psychogeriatrics, 24, 1368–1386. doi:https://doi.org/10.1017/s104161021200035x
- Onyike, C. U., & Diehl-Schmid, J. (2013). The epidemiology of frontotemporal dementia. International Review of Psychiatry (Abingdon, England), 25, 130–137. doi:https://doi.org/10.3109/09540261.2013.776523
- Patton, M. Q. (2002). Qualitative evaluation and research methods. Los Angeles, CA: Sage.
- Polenick, C. A., Struble, L. M., Stanislawski, B., Turnwald, M., Broderick, B., Gitlin, L. N., & Kales, H. C. (2018). "The filter is kind of broken": Family caregivers' attributions about behavioral and psychological symptoms of dementia. The American Journal of Geriatric Psychiatry, 26, 548–556. doi:https://doi.org/10.1016/j.jagp.2017.12.004
- Rabanal, L. I., Chatwin, J., Walker, A., O'Sullivan, M., & Williamson, T. (2018). Understanding the needs and experiences of people with young onset dementia: A qualitative study. BMJ Open, 8, e021166. doi:https://doi.org/10.1136/bmjopen-2017-021166
- Rabinovici, G. D., & Miller, B. L. (2010). Frontotemporal lobar degeneration: Epidemiology, pathophysiology, diagnosis and management. CNS Drugs, 24, 375–398. doi:https://doi.org/10.2165/11533100-000000000-00000
- Rosness, T. A., Haugen, P. K., & Engedal, K. (2008a). Support to family carers of patients with frontotemporal dementia. Aging & Mental Health, 12, 462–466. doi:https://doi.org/10.1080/13607860802224334
- Rosness, T. A., Haugen, P. K., Passant, U., & Engedal, K. (2008b). Frontotemporal dementia: A clinically complex diagnosis. International Journal of Geriatric Psychiatry, 23, 837–842. doi:https://doi.org/10.1002/gps.1992
- Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M., & Warren, J. D. (2010). The diagnosis of young-onset dementia. The Lancet Neurology, 9, 793–806. doi:https://doi.org/10.1016/S1474-4422(10)70159-9
- Savin-Baden, M., & Major, C. H. (2013). Qualitative research: The essential guide to theory and practice. Abingdon, England: Routledge.
- Sikes, P., & Hall, M. (2018). The impact of parental young onset dementia on children and young people's educational careers. British Educational Research Journal, 44, 593–607. doi:https://doi.org/10.1002/berj.3448
- Spreadbury, J. H., & Kipps, C. M. (2018). Understanding important issues in young-onset dementia care: The perspective of healthcare professionals. Neurodegenerative Disease Management, 8(1), 37–47. doi:https://doi.org/10.2217/nmt-2017-0029
- Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care , 19, 349–357. doi:https://doi.org/10.1093/intqhc/mzm042
- van Vliet, D., Bakker, C., Koopmans, R. T., Vernooij-Dassen, M. J., Verhey, F. R., & de Vugt, M. E. (2010). Research protocol of the NeedYD-study (Needs in Young onset Dementia): A prospective cohort study on the needs and course of early onset dementia. BMC Geriatrics, 10(1), 13. doi:https://doi.org/10.1186/1471-2318-10-13
- van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Verhey, F. R. (2011). Caregivers' perspectives on the pre-diagnostic period in early onset dementia: A long and winding road. International Psychogeriatrics, 23, 1393–1404. doi:https://doi.org/10.1017/S1041610211001013
- van Vliet, D., de Vugt, M., Bakker, C., Pijnenburg, Y., Vernooij-Dassen, M., Koopmans, R., & Verhey, F. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43, 423–432. doi:https://doi.org/10.1017/S0033291712001122
- Vasileiou, K., Barnett, J., Barreto, M., Vines, J., Atkinson, M., Lawson, S., & Wilson, M. (2017). Experiences of loneliness associated with being an informal caregiver: A qualitative investigation. Frontiers in Psychology, 8, 585–511. doi:https://doi.org/10.3389/fpsyg.2017.00585
- Visser, F. S., Stappers, P. J., van der Lugt, R., & Sanders, E. B. N. (2005). Contextmapping: Experiences from practice. CoDesign, 1, 119–149. doi:https://doi.org/10.1080/15710880500135987
- Zhu, X. C., Tan, L., Wang, H. F., Jiang, T., Cao, L., Wang, C., … Yu, J. T. (2015). Rate of early onset Alzheimer's disease: A systematic review and meta-analysis. Annals of Translational Medicine, 3, 1–6. doi:https://doi.org/10.3978/j.issn.2305-5839.2015.01.19